A Message from the Founders

Imperfectly, our son Danny was a child with epilepsy. Tragically, our son Danny died from epilepsy. Specifically, Danny died from Sudden Unexpected Death in Epilepsy, also known as SUDEP. Graphically, Mariann found Danny dead in his bed one cold December morning two weeks before Christmas in 2009. Horrifically, I tried to resuscitate Danny that morning in front of his sister Mary Grace and his two brothers, Johnny and Tommy. Distressingly, we believed that we had been doing everything possible to care for Danny.

Through two years of treatment by medical professionals, we were never informed that Danny had epilepsy, and even though Danny suffered from seizures we were never informed that Danny could die from one of his seizures. Further, not once was information presented regarding organizations that could educate and support us as we swirled through Danny’s seizure episodes.

And so when Danny died, we knew that he and that we had been robbed of the opportunities of a lifetime. An actual lifetime. And we were furious. And we asked each other in our bedroom on that morning in December –-after we had returned home from the hospital where Danny’s body had grown cold atop of ours as we laid with him and prolonged letting the Medical Examiner’s office take him to the morgue– we asked ourselves, “how could this happen?”

Part of our answer to that question has been the formation of the Danny Did Foundation, which we are nurturing and developing as if it were part of Danny himself, and together with so many other individuals and organizations, we are changing the perception of epilepsy and the outlook for those afflicted by epilepsy. We are pursuing our goals with the aim of keeping people alive until the ultimate mission –a cure for epilepsy– is accomplished, and we are leading this charge with a single mantra in mind: Example is not the main thing influencing those around you, it is the only thing.

Our vision is this: One day, in the foreseeable future, a mother brings her child to the child’s doctor. The mother tells the doctor that the child has had a seizure. The doctor informs the mother of the full range of potential outcomes that can result from seizures. Tests are performed on the child. The doctor talks to the mother about long-term medicinal strategies, as well as of immediate options available to the mother for caring for her child at home. The mother and her child then leave the physician’s office. When they do, we see the mother holding her child’s hand, assuring her child that no stone will go unturned in her care for her child. And in the mother’s other hand we see her carrying a device made for home-use that reliably senses seizure activity and sounds an alarm when such activity occurs. It will be analogous to a mother leaving the doctor’s office with an inhaler or a nebulizer after her child’s first bout with asthma. It’s not so complicated, is it?

Danny only had seizures in his sleep, and we were lucky enough on several occasions to catch Danny while he was seizing. At these times we were able to address the seizure. We could protect him. We could time the seizure. We could administer medicine. We could call 911. We were able to address the seizure and could care for Danny in his time of greatest need. A device made for home-use that reliably senses seizure activity and sounds an alarm when such activity occurs offers the opportunity, at the very least, for a parent or loved one to address the seizure. Danny, after all, did not die on any of the occasions that we were able to address a seizure in progress.

Danny’s example to all of us was that Danny Did take his time in life, Danny Did engage others in his life, and Danny Did enjoy his life. Danny Did, and we can –and will– through time, people, and passion succeed in our mission to prevent deaths caused by seizures. Thank you for your participation in that success, and for helping to prevent another death caused by a seizure.